News

Forget-Me-Not Memory Cafe Volunteers Meeting

10am Thursday 30th January 2025 at The Methodist Church Hall, Commercial Road,

St Keverne, TR12 6LY

October 2024

Fundraising is a constant for all memory cafes and we are no different, as we seek to cover the running costs that we incur every year. We apply for grants from local funding bodies and do our bit by holding coffee mornings and afternoon teas in the village. We are ever grateful to local people and businesses who generously donate money or raffle prizes to the cafe. Their support is invaluable.

easyfundraising, the UK’s largest charity online shopping site, is an additional funding stream that we have tapped into over the last few years. 7000 online retailers such as M&S and Argos donate money to charities and good causes through easyfundraising.

If you would like to help out all you have to do is go to www.easyfundraising.org.uk

If you shop online or have friends and family who do please consider signing up and selecting Forget-Me-Not Memory Café as your preferred good cause. Then every time you shop online with a participating company you can click to have them send a small donation to us. But we have to raise at least £15 per quarter to receive the donations otherwise they are lost.

NB: you have to download the easyfundraising app/reminder alert onto your PC or mobile phone (or both)

July 2024

The Cornwall Memory Cafe Network are

Winners of the National Dementia Care Awards 2024

‘Dementia Friendly Community Project of the Year.’

Cym from Launceston Memory Cafe and Pauline from Liskeard Memory Cafe had the honour of representing the network at a glamorous awards ceremony at the Royal Lancaster London where they proudly accepted this prestigious accolade on behalf of everyone in the Cornish memory cafe network! This fantastic recognition highlights the amazing work you do to transform the lives of people with memory loss and their carers, in our communities every day.

Here is a comment from the judging panel:

'This is an outstanding project covering the whole of Cornwall providing a place where any one with memory loss, including those with early onset Dementia and their Carer or family are given the support and advice they need to live better lives with Dementia. They have managed to overcome the problems of providing a best practice service even in challenging rural areas of the county. They are a community platform helping people to find and share services, activities and events happening in their County and the Isles of Scilly.'

April 2024

Recent Activities at the Memory Café

Music and singing are important for our members and at our first café session we were well entertained by Goldcoast, music duo Martin and Sarah, who perform many of the most popular songs from the 60s through to the 80s. Their upbeat performance and enthusiasm kick-started the year in fine style and I’m sure many of us went away humming one or two of our favourite songs.

At our two café sessions in February we hosted local musicians Nigel Skewes and Al Stewart (not the folk singer!) who both offer a range of popular music for everyone to sing along with. Sweet Caroline (with lots of arm waving) has never been more popular. Al also plays the saxophone which sounded very sweet in our new venue.

We also had a visit from Josh the Magician, who worked with small groups of participants showcasing his skilful close-up magic tricks and illusions. This was a new sort of activity for us and proved very entertaining, and, as no one could see how he managed to do his tricks, it gave us plenty to talk about.

We had two 'specials' in March; a visit to Roskilly's for afternoon tea and an Easter Lunch and bingo session. We thought (were hoping) for good weather for our trip to Roskilly's, looking out as we were for some sign of spring, but had to put up with the persistent drip-drip of rain and gusts of chilly wind. Fortunately indoors at The Croust House, with the fire lit, it was toasty warm and everyone enjoyed their afternoon tea. The Easter lunch, with the always fabulous pasties from Gear Farm and home-made trifles to follow, gave us an opportunity to sit down and eat together and enjoy one another's good company. Bingo followed with guest caller Geoff doing sterling work and, once we had worked out the rules (possibly), we had winners and Easter-themed prizes.

Many thanks to all who took part in organising the activities and those who helped out on the day.

It's Official!

Forget-Me-Not Café has a new venue for 2024

After taking up temporary residence at the Methodist Church in Commercial Road at the beginning of 2024, a decision was taken by members and volunteers to ask the local Methodist Council if we could become permanent residents from the beginning of April. Now this has been agreed we are delighted to announce that the Church (which is also the Church Hall and a well-used venue in the village) will be our new home. It has all the usual amenities, including parking and accessible entrance and toilets.

Our opening times remain the same

April 2024

New Blood Test for Dementia

By Fergus Walsh

Medical editor BBC

Thousands of people are to be offered a blood test for dementia as part of a trial run by memory clinics across the UK.

The hope is that more people will be able to access care, support and

new drug treatments at an earlier stage.

The research, by University College London and the University of Oxford, will involve around 5,000 volunteers.

The five-year project will study blood tests for Alzheimer's disease and other forms of dementia.

Currently, around a third of patients with dementia never get a formal diagnosis and are left with worry and uncertainty about their condition.

Rogue proteins

Only around 2% of patients have one of the 'gold standard' tests for Alzheimer's - either a specialist non-invasive PET [Positron Emission Tomography] brain scan or a spinal lumbar puncture.

Both can show the presence of rogue proteins in the brain such as amyloid and tau [tubulin associated unit] which start to accumulate up to 20 years before symptoms emerge - but tests are expensive.

The Oxford team will be looking at a range of blood tests, which could be a cheaper and easier way for doctors to spot early signs of the disease.

One blood test will look for traces of these proteins in the blood in order to diagnose Alzheimer's disease, the most common form of dementia. Some tests will also look for potential biomarkers for vascular and frontotemporal dementia, and dementia with Lewy bodies.

The researchers will also look at whether the blood tests can help detect these diseases at various stages.

Dr Vanessa Raymont, from the University of Oxford, is leading a study which will recruit volunteers from more than 50 UK trial sites, which are all NHS memory clinics.

She told the BBC that although several dementia blood tests had already shown promising results, they had limitations.

"Research has tended to exclude the very elderly, ethnic minorities and those with other medical conditions so we need to understand what the data looks like in the real world, which is why these projects are so important."

The University College London (UCL) team will focus on the most promising biomarker for Alzheimer's disease, called p-tau217, which can indicate levels of amyloid and tau in the brain.

Its trial will see if measuring p-tau217 in the blood can increase the rate of diagnosis for Alzheimer's disease in people with early dementia, but also those with mild but progressive memory problems.

Lucy, whose mother had dementia, told BBC News she would like to volunteer for the trial: "I have very close personal experience. Fortunately, she was relatively old - she was in her 80s - when it started, and she died at 97. But her last few years were really mired by the disease. Anything that might be able to pick it up earlier and if there was some treatment in the future...that would be wonderful."

Access to new treatments

Jonathan Schott, professor of neurology at UCL, who is leading the trial, said: "An early, accurate diagnosis of Alzheimer's disease is already important, allowing people to access appropriate care and medications. If, as we hope, new treatments that can slow down Alzheimer's disease become available soon, then this will be vital," he said.

"This would pave the way for fair and equitable access to new and potentially life-changing treatments to all who might benefit."

Two treatments have shown in trials that they can slow the progression of early stage Alzheimer's. Doctors say the benefits are modest but they represent the first 'disease-modifying' drugs.

The drugs, lecanemab and donanemab, are currently being considered by the MHRA, the body which approves drugs in the UK.

Even if they are granted licences, they would then need to be given the green light by health assessment bodies which consider their cost-effectiveness for the NHS, before being rolled out to patients.

Dr Sheona Scales, director of research at Alzheimer's Research UK, said: "We've seen the enormous potential that blood tests are showing for improving the diagnostic process for people and their loved ones in other disease areas."

She said it was important to see "the same step-change in dementia", which is the greatest health challenge facing the UK.

The Blood Biomarker Challenge is being funded by Alzheimer's Society, Alzheimer's Research UK, the National Institute for Health and Care Research and Gates Ventures, including £5m from People's Postcode Lottery.

December 2023

Recent activities at the café

Throughout 2023 the hard work of our Activities Committee ensured we had a varied programme of events for our members. Music is often a mainstay as we find singing not only good for the soul but also for the memory. It’s surprising how many of our members (and volunteers!), who are losing the ability to remember day-to-day events, recall the lyrics of songs from their younger years.

During November we had a return visit from Caroline Schance who uses many different genres of music to accompany all sorts of sitting-down exercises. Bending, stretching, toe-tapping and hand clapping gets everyone, and all parts of the body, involved and the blood flowing—not to mention the laughter too—something to lift the mood and work off the effects of the home-made cakes that are such a feature of the café.

In contrast, we also welcomed Philip Rodda, a member of the family business that makes clotted cream and dairy products, to tell the story of how it all began on a farm in Scorrier. Philip brought a video and historic photographs of the farm and factory. It was full of memorable moments: how one woman’s idea of producing and selling clotted cream became a reality that grew over the years, from farm kitchen to Buckingham Palace, and all in sixty minutes.

We only had one event in December and this was our Christmas Lunch, held for the second year running at Porthallow Village Hall, with the lovely views over Falmouth Bay. Once again a cohort of trusty volunteers prepared, cooked and served the meal, as well as setting up the hall and making sure there was a warm welcome for all our guests. It was a great success and many thanks to all who made it such a memorable event

We are looking forward to meeting old and new members at our café sessions in 2024, and sharing with them another wide-ranging line-up of activities.

November 2023

Young-onset dementia memory café

The Cornwall Memory Café Network is hosting Cornwall's inaugural young-onset dementia memory café. This is a relaxed social group for people with young-onset dementia and their loved ones and carers.

The first session is on Friday 24th November 1pm-3.30pm

at The Exchange, Princes Street, Penzance, TR18 2NL

Booking essential

Please contact: email- cmcn@disabilitycornwall.org.uk

phone- 07971 290464

On 9th November Forget-Me-Not Memory Cafe had a visit from Sue and Caitlin, two of the Alzheimer's Society's Dementia Support Workers working in Cornwall. It was great to meet them and make this important connection. They were able to speak to some of our members as well as leaving us with leaflets and handouts. For more information: email- cornwall@alzheimers.org.uk

or phone- 01872 277963

September 2023

Wayfinder Podcast

Welcome to the Cornwall Memory Cafe Network Podcast! Did you know there are many forms of Dementia?

Our podcast hosts and Cornwall Memory Cafe Network Wayfinders Anna & Jules talk to Newquay Purple Angels Ambassador Lynn Bartrip-Kay as she speaks passionately about the Purple Angels and their mission to create a dementia-aware community through workshops and awareness sessions.

Lynn works tirelessly to spread awareness of the disease, frequently operating dementia awareness workshops in Cornwall for businesses and everyone that wants to come along. Lynn talks about her own experience with having loved ones with dementia, she reads an extremely poignant poem about the illness and the power of music for people with memory loss, and how above all else, music can bring back some memories and emotions.

Purple Angels was co-founded by Norman McNamara a resident of Torbay, Devon, UK who was diagnosed with dementia at only 50 years of age. Whilst out shopping one day he was rudely spoken to by a shopkeeper and decided to change the way people see dementia and treat others. The organisation has now grown to operate globally with over 1000 ambassadors!
To find out more about the Purple Angels in Newquay, go to: www.newquaypurpleangels.com

July 2023

New drug for treating Alzheimer's

By Fergus Walsh and Michelle Roberts

BBC News

A new drug, donanemab, is being hailed as a turning point in the fight against Alzheimer's, after a global trial confirms it slows cognitive decline.

The antibody medicine helps in the early stages of the disease by clearing a protein that builds up in the brains of people with this type of dementia.

Although not a cure, charities say the results in the journal JAMA mark a new era where Alzheimer's can be treated.

The UK's drugs watchdog has started assessing it for possible NHS use.

The drug works in Alzheimer's disease, not in other types of dementia, such as vascular dementia.

In the trials, it appears to have slowed the pace of the disease by about a third, allowing people to retain more of their day-to-day lives and tasks, such as making meals and enjoying a hobby.

Donanemab, made by Eli Lilly, works in the same way as lecanemab - developed by companies Eisai and Biogen - which created headlines around the world when it was proven to slow the disease.

Although extremely promising, these drugs are not risk-free treatments.

Brain swelling was a common side-effect in up to a third of patients in the donanemab trial. For most, this resolved without causing symptoms. However, two volunteers, and possibly a third, died as a result of dangerous swelling in the brain.

Another antibody Alzheimer's drug, called aducanumab, was recently rejected by European regulators over safety concerns and a lack of evidence that it was effective enough for patients.

In the donanemab trial, researchers examined 1,736 people aged 60 to 85 with early-stage Alzheimer's.

Half of them received a monthly infusion of the treatment and the other half were given a dummy drug, also known as a placebo, over 18 months.

The findings show:

· The drug seems to have a meaningful benefit, at least for some patients

· Those who had earlier disease and less brain amyloid at baseline derived greater benefit, in terms of clearance seen on brain scans

· Those given the drug also retained more of their day-to-day lives such as being able to discuss current events, answer the phone or pursue hobbies

· The pace of the disease, judged by what people could still do day-to-day, was slowed by about 20-30% overall - and by 30-40% in a set of patients who researchers thought more likely to respond

· There were significant side-effects and patients will need to be aware of risks of treatment

· Half of patients on donanemab were able to stop the treatment after a year, because it had cleared sufficient brain deposits

Amyloid is just one part of the complex picture of Alzheimer's, and it is unclear if the treatment will continue to make more difference over a longer period, experts caution.

The drug's effects may be modest, but the results provide further confirmation that removing amyloid from the brain may change the course of Alzheimer's, and help people affected by this devastating disease if they're treated at the right time, they say.

Prof Giles Hardingham from the UK Dementia Research Institute said: "It is terrific to see these results published in full today.

"We have waited a long time for Alzheimer's treatments, so it's really encouraging to see tangible progress continuing to gather pace in the field."

Dr Susan Kohlhaas, from Alzheimer's Research UK, said: "Today's announcement marks another milestone.

"Thanks to decades of research, the outlook for dementia and its impact on people and society is finally changing, and we're entering a new era where Alzheimer's disease could become treatable."

Speaking to BBC Radio 4's PM programme, former Prime Minister David Cameron said resources should be put towards further research into what he called a "statin for the brain".

"We want a pill that people who have the build-up of these proteins in the brain can take every day or every week in order to clear those proteins out of the brain and therefore reduce your chances of getting a disease that causes dementia," he said.

Asked if the government were prepared to invest where needed to roll out new treatments, Mr Cameron said there was a real incentive to do so: "We're a country of sixty million people, with a million people with dementia, many of them in very expensive residential care settings and so there is a lot of savings to be had from effectively treating people….I'm hopeful that our system can deliver."

Lecanemab costs around $27,500 (£21,000) in the US, where it is licensed.

It is not clear how much donanemab may cost and how long it might take to get approval in the UK, but Alzheimer's experts said having two drugs would help promote competition on price.

The UK's drug's watchdog NICE says it has already started work on its appraisal of donanemab for treating mild cognitive impairment or mild dementia caused by Alzheimer's disease.

"Our aim is to produce recommendations on its use in the NHS as close as possible to it receiving its UK licence," said a spokesperson.

Dr Emer MacSweeney, consultant neuroradiologist and medical director at Re:Cognition Health, led the trials of donanemab in the UK.

She said: "This is really significant and one of the biggest breakthroughs."

The Alzheimer's Society said: "This is truly a turning point in the fight against Alzheimer's and science is proving that it is possible to slow down the disease."

Around 720,000 people in the UK might potentially benefit from these emerging new Alzheimer's disease treatments if they're approved for use, but the Alzheimer's Society said the NHS is "simply not ready to deliver them".

Kate Lee, CEO for the charity, said: "Timely, accurate diagnosis is key, and currently only 2% of people in England and Wales receive their diagnosis through the specialist investigations needed to be eligible for these treatments.

"Alongside this, these emerging Alzheimer's disease drugs require regular infusions and monitoring, and the NHS is not yet equipped to do this at scale."

July 2023

Recently the memory café received a donation of £500 from our local police team in Helston, who have been given money seized from criminals through the Proceeds of Crime Act (2005) to help fund local community projects.

July 2023

The Cornwall Memory Café Network

There are about fifty memory cafés in Cornwall which operate under the membership and guidance of Cornwall Memory Café Network (CMCN).

CMCN has developed a partnership with DisAbility Cornwall and Isles of Scilly, who have appointed a memory café coordinator for the county as well as two local memory café advisors or ‘wayfinders’. The wayfinder for West Cornwall is Anna and her role is to support memory cafés and those attending them. Specifically, she can assist members and their families with the following:

making applications for particular allowances or grants
arranging for practical assistance in times of hardship
giving guidance on assistive technology
helping with engagement in local community activities

Anna can be contacted:

anna@disabilitycornwall.org.uk

mobile: 07510 235207

July 2023

Do you shop online?

Did you know that over 7000 online retailers such as M&S and Argos donate money to charities and good causes through easyfunding, the UK’s largest charity shopping site.

Did you know Forget-Me-Not Memory Café (St Keverne) is registered with easyfunding?

If you would like to help out all you have to do is go to www.easyfundraising.org.uk

Here you can sign-up and select Forget-Me-Not Memory Café as your preferred good cause.

NB: you have to download the easyfunding app/reminder alert onto your PC or mobile phone (or both)

Then every time you shop online with a participating company you can click to have them send a small donation to us.

So far we have received over £40 through easyfunding.

July 2023

Devon and Cornwall Alerts

This new community messaging service operated by Devon and Cornwall Police tells you what is happening in your area and allows you to respond directly.

You choose what sort of information you receive:-

Crime, anti-social behaviour, witness and missing person appeals, community events and local good news*

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